National research and policy updates on adult support, interventions for anxiety, inflexible behavior, severe self-injury and more

July 20, 2016

At this week’s quarterly meeting of the federal Interagency Autism Coordinating Committee (IACC), researchers presented new findings on improving support for college students and adults on the spectrum as well as advances in understanding and treating for autism-related anxiety, severe self-injury and other disabling behaviors. The meeting’s public comment period brought impassioned calls for more research on a broad range of concerns.

Under the mandate of the Autism CARES Act, the IACC coordinates all autism research and service activities within the US Department of Health and Human Services. It is charged with ensuring that a wide range of ideas and perspectives are considered and discussed in a public forum.

The meeting highlights below include links to related materials and written remarks. In addition, the IACC will post the archived webcast of the full-day meeting on its multimedia page in the coming days.

In opening the meeting, IACC chair Bruce Cuthbert introduced the committee’s newest member, Stuart Shapira. A pediatric geneticist, Dr. Shapira is chief medical officer for the National Center on Birth Defects and Developmental Disabilities at the Center for Disease Control and Prevention (CDC).

* Samantha Crane, of the Autistic Self Advocacy Network, reported on progress in states developing and implementing policies supporting adults with autism and other developmental disabilities. Ms. Crane directs public policy efforts for the Autistic Self Advocacy Network.

She noted that Tennessee is the first state to have met new Medicaid rules for providing effective, personalized services through its community-based programs. “Tennessee conducted extensive site assessments, communicated with broad array of stakeholders, partnered with other agencies like managed care organizations and created strong accountability guidelines,” she noted. As a result, its community services – including sheltered workshops – are required to provide each participant with a personalized plan, with an emphasis on training programs that promote skills, community integration and employment.

Ms. Crane also spoke encouragingly about the Transition to Independence Act now before Congress. If passed, it will provide funding to states that create innovative and effective programs to help people with disabilities achieve gain employment and integrate into their communities.

* Margaret Miller, of the Autism Society, said that her organization is developing meaningful milestones and indicators to judge the effectiveness of services that help people with autism transition to adulthood, with a special focus on gain meaningful employment and housing that maximizes independence and community integration.

* Anne Roux, of the Drexel Autism Institute, described the institute’s new national-indicators report on vocational rehabilitation – noting that people with autism still have more difficulty finding employment than any other disability group. (See “Drexel Releases Report on Vocational Rehabilitation.”)

* Edlyn Peña, of California Lutheran University, described her research study on the supports needed for students with autism to successfully transition to college. Her study involved interviewing parents, as she wasn’t able to recruit enough students for the study. Of note, she found that the vast majority of parents were white, had family incomes of $90,000 or more, and had themselves attended college. “The findings suggest a pattern of inequitable access to college for students with autism,” she said. She called for greater efforts to engage and support parents and students from marginalized backgrounds to provide them with the resources they need to access and succeed in post-secondary education.

*Susan Daniels, director of the U.S. Office of Autism Research Coordination, announced that the IACC had finalized the working groups that will update the committee’s strategic plan, with an emphasis on diverse points of view. The working groups will be meeting via conference line by October, with all calls open to the public. Check the IACC website for schedules and details.

Dr. Daniels also noted that the strategic plan update remains open for public comment through the end of July. Learn more here.

* Julianna Rava, science policy analyst with the U.S. Office for Autism Research Policy, shared the latest breakdown of private and public funding across the seven areas of the IACC strategic plan. See graphic below. (Note: Throughout the meeting, committee members and presenters echoed the need to fund more research focused on supporting people with autism across the lifespan.)

Public Comment Period

The meeting’s regularly scheduled public comment period allowed brief presentations of three minutes each.

Several parents urged more research investigating vaccination and hypoxia (oxygen deprivation) as contributing to autism. Other parents urged improved autism training for general education teachers and greater support for biomedical interventions. A music therapist urged expanded recognition of the benefits of music therapy for improving socialization, language and learning among children with autism. An early intervention provider who was also the parent of a child with autism described the dramatic social and behavioral improvements seen after she and other parents removed all electronic media from their homes. A representative of Madison House Autism Association called for greater research and support for adults who have autism.

Panel on challenging behaviors
An afternoon panel featured overviews of research on better understanding and addressing severe behavioral challenges associated with autism. (See references and materials for this panel below.)

* Denis Sukhodolsky, of Yale Child Study Center, described advances in addressing severe anxiety and irritability in children and adolescents with autism. Cognitive behavioral therapy, in particular, is helping many people whose autism is complicated by severe anxiety, he said. The approach involves highly structured methods for exposing people to their fears in ways that feel safe. While generally effective, the method does not work for all children or adults who have autism. He emphasized the importance of developing new, effective approaches to help these people with their debilitating fears.

In children and adults with autism, severe irritability – including tantrums, aggression and self-injury – often results from interrupting restricted interests and the inability to communicate. He described success with individualized therapy that seeks to understand the underlying frustrations and negotiate compromises.

He expressed hope that new early interventions can prevent the development of severe irritability – which tends to worsen with age and become particularly problematic in adolescence and adulthood.

* James Bodfish, of Vanderbilt University School of Medicine, described his team’s research developing family-based early interventions to reduce or prevent the development of severely restricted interests and behaviors that interfere with quality of life. Dr. Bodfish noted that this work included the research of Autism Speaks Weatherstone Fellow Kathryn Unruh, who is investigating nonsocial interests and motivations in toddlers affected by autism with the goal of tapping these interests to improve social learning and development.

* Frank Symons, of the University of Minnesota, described his research into severe self-injury associated with developmental disorders, including autism. Parents are understandably desperate for help, he noted. But after three decades of research, we still have little understanding of what drives the behaviors and whether or not they involve increased or decreased pain perception. His current research focuses on identifying red flags that suggest a young child is predisposed to self-injury, which tends to worsen with age. Such warning signs could signal an opportunity to intervene in ways that prevent or decrease such behaviors. At present, little is known on how to accomplish this.

The next full meeting of the IACC is scheduled for October 26.

The IACC will post the archived webcast of the July 19 meeting on its multimedia page in the coming days.

Did you know that the IACC is updating its strategic priorities and wants input from the autism community by July 29?
Learn more here.